Coke Floats & Chemo: Not doing cancer properly

Coke Floats & Chemo: Not doing cancer properly: A thick cloud of overwhelmedness has hidden me away from a lot of reality over the past few weeks. Some sort of mini-hibernation, where I&#...

I'm not doing cancer properly

A thick cloud of overwhelmedness has hidden me away from a lot of reality over the past few weeks. Some sort of mini-hibernation, where I've barely had the energy to go online, engage with friends, or cope with anything more intellectual that the act of putting one foot in front of the other. If you are one of many lovely people I haven't been in touch with recently, please don't take it personally, I've been here in body but not always in spirit. I think it's the result of too much happening too quickly over the past year or so, and spending the year not just fighting for my life, but also firefighting crisis after crisis after catastrophe, with no time to stop and process or absorb what's happening. I'm fine, but just mentally exhausted, but I think I'm beginning to come out the other side relatively unscathed. 

I think the whole cancer spread news has hit me harder than I wanted to admit even to myself, and on lots of different levels. There is so much hype and nonsense surrounding breast cancer, all that pink, all that earnestness about awareness, and it sometimes feels as if there is an expectation to do breast cancer “properly”, and everyone seems to have a “breast cancer survivor” story to tell. I now that I'm not going to be a member of the BC Survivor's club, and that I've failed in doing it properly. It's unspoken, and everyone is lovely, and maybe I'm totally oversensitive, but I do detect from certain quarters a very real sense of disappointment, as if I didn't fight hard enough, as if I've let the side down in some way. Maybe it's coming from me rather than other people, but there has definitely been a period of adjustment, a few weeks trying to get my head around the enormity of it all.

Don't worry, I've no intention of crawling into my death bed for a very long time to come, and at no stage has anything even close to full-blown depression threatened to knock me for six. I just needed, and may continue to need from time to time, some quiet headspace to catch my breath, rearrange the battle plans, pick myself up and get going again.

And heck, have I got going! Three weeks ago, I spoke about needle-phobia at the NIVAS conference, and it was really well received. WM came with me, and we were thoroughly spoilt and made to feel like VIPs, and it was a really lovely day, not least because I was presented with the largest bouquet of the most beautiful flowers I have ever seen. 

My gorgeous flowers

Well, word has spread, and I've now been invited to talk to a group of nurses at UCH, a leading London hospital, as well as to another group of nurses at the Royal Marsden. In addition, I'm also going to be leading Laughter Yoga sessions for staff at both the hospitals too.

Laughter Yoga has featured quite a bit this week, I ran 3 consecutive workshops at a local school for children with autism. The first one was with a group of 9 and 10 year old boys, all severely autistic, then another workshop for the staff, and finally a workshop for the brothers and sisters of the autistic children. Three very different sessions, adapted appropriately for each group, but each workshop went really well, and it was so rewarding to see the autistic boys come out of their shells and engage, and best of all, laugh long and loud with us. I wouldn't have missed the day for the world, it left me with feeling energised and very humbled.

We've also got another performance of Coke Floats and Chemo on Thursday, and it's totally sold out! I had better find a minute to revise my lines or they'll all be clamouring for their money back. To be honest, I'm really quite looking forward to it.

Sad news recently is that Steve, our dog, has moved to another house where I think he'll be more settled and happy. His new family are very experienced dog-owners, with other dogs, a huge garden and they live in the countryside. He was with us for four months, and we tried everything we could, two different trainers, intensive one-to-one residential training, Saturday morning lessons in the park with other dogs, we even had him neutered to see if it would calm him down a bit. Eventually it became obvious that he had picked up that I wasn't as well as I should be, and he was becoming more and more dominant around me. I was getting bitten several times a day, which is a concern because I've lost lymph nodes on both sides; any tiny cut could result in lymphodema, which is a lifelong disability. We also had to have him on the lead all the time, even indoors, because he was so destructive with furniture and belongings. It was a tough decision, because he was also adorable, and sometimes I think you fall that little bit more in love with the ones with huge personalities who can be very naughty. We had a few very sad, tearful days, but there wasn't really any other choice. It was my youngest who made the decision in the end that he must go, and I was very proud of his maturity and judgement in doing so.

My priority has to now be to stay as well as I possibly can for as long as I possibly can. I've concocted an “anti-cancer” recipe, and I'm cooking it up in batches and having it for breakfast every morning. When I can get my act together, I'll take photos as I cook it and share the recipe here. I've put a lot of research into it, and I've found a way to combine all the foods that seem to really work to kick cancer cells into shape. I'm also doing Laughter Yoga every day – laughing is incredibly good for you, releasing endorphins, increasing oxygen intake, and boosting your immune system – as well as drinking green tea by the gallon and forming an on-going relationship with my exercise bike. Does anyone actually ever get to like green tea? I loathe the stuff, but it really does work at keeping cancer cells in their place, so it's three cups of the horrid stuff regardless.

One thing's coming up that really is a bit exciting, but also will definitely be a bit tear-jerking poignant too. Toby is leaving school soon, and he has his leaver's ball on Friday. He was so proud to try on his new suit to wear to the ball - it's his first ever posh suit and tie, and was thrilled with it. 

Toby loving trying on his new suit

There's so much else that's going on, mostly great stuff, but some less so. I'd write non-stop til the week after next and bore you senseless if I talked about everything. So, until next time, and hopefully it won't be so long until then, please take care of yourselves and your favourite people, and I'll do the same.

Adventures with breast cancer: Patient Power

Adventures with breast cancer: Patient Power: What a fabulously lovely Christmas I've just had - surrounded by the most of the people I love best in the world - my amazing dad, my lovely...

Patient Power

What a fabulously lovely Christmas I've just had - surrounded by the most of the people I love best in the world - my amazing dad, my lovely sister, WM and my three gorgeous children. So I was up to my eyes in chemo side-effects, beyond exhausted and barely able to stand, but I still managed to cook the whole Christmas 4-course meal with trimmings galore, even if I wasn't able to eat it myself. There were so many presents for the kids that opening them all took all day, with Toby starting at 3am when he discovered Santa Claus had already delivered a sack load of presents on the end of his bed. 

The presents weren't just for the children. I was really touched by the thoughtfulness that had gone into choosing presents especially for me. One friend had taken the trouble to text WM to let him know that BHS were selling a "Coke Float Kit", another gave me a Mint Hot Chocolate Kit, including the mini-marshallows to go on the top, Mary Poppins gave me a really gorgeous mug covered with photos of Toby - every photo exudes his unique joy an exuberance, and another friend gave me some Guatemalan Worry People - 7 tiny little hand-made dolls that you tell your worries to and then sleep with them under your pillow - the worries then melt away overnight, apparently. 

All told, the whole day just seemed to be packed full of love.  There were no rows or arguments, everyone was delightful, helpful and just perfect all day, and to be honest, that feeling of love has lasted all week so far.  Although I packed cancer away in the back of my mind for the week, I think one of the many avantages of having cancer is that it makes me far more aware of the nice moments, more appreciative and much more in tune to counting my blessings, of which there are so many. 

Overshadowing the whole week, though, has been the chemotherapy and how pants it has made me feel. I try to tune it out, and to pretend it's fairly nothing, but it's there and I can't always ignore it.The inability to eat, or to drink, the sometimes excrutiating bone pain, the stomach upsets that sometimes have kept me in the bathroom for hours on end, even during the night, the numbness in my hands and feet which make me clumsy as well as very unsteady when walking, the total, awful exhaustion - not really sleep related, more to do with exhaustion seeping into every bone and muscle - they all combine and make even standing out of a chair seem like a Herculian effort. 

Normally I don't just think I'm going to come through this cancer to live a long, happy and healthy several more decades, I absolutely know it. I'm normally irritatingly, enthusiastically positive about every last cancer cell being obliterated into oblivion. Chemo weeks are the exception. When the chemo is doing it's brilliant job of hunting down and fatally poisoning any stray cancer cell that has the audicity to think it can hang around in my body, somehow all the doubts and fears come flooding into my consciousness, and I spend a week or so convinced I'll soon be pushing up the daisies. This week has been no exception. I try to hide it, and thought I was good at that, but my extremely insightful daughter noticed. "Mum," she said,  "People always say how positive you are, don't they?  Well I can see that you're not at all. What you are is cheerful about it, and people think cheerful and positive are the same things, but they're not. I never realised til now what a negative pessimist you really are." Oops, I'd better try harder in future.

Chemo is over, the whole six cycles, so positivity will come back with a vengeance in the next few days. However, now it's over, I've got to seriously get back on the wagon of eating a counter-cancer diet and adopting a counter-cancer lifestyle. The past four months on chemo have been an ordeal, and at times eating anything at all for days on end has been impossible. Getting through it was the priority, and in the knowledge that the chemo was fighting a mighty battle against any residual cancer cells, I let myself off the hook. Now that I won't have the chemo back-up, I've got to re-establish all the stuff I tried so hard to do during the summer. Green tea by the gallon, exercising daily, spoon-fuls of tumeric, garlic and ginger, shed loads of fruit and veg, and cutting out all processed food. Why do things that are bad for you taste so good? I'm currently into a salami-and-salad-cream-sandwich-on-very-while-bread phase - a glorious cacophony of processed food at it's best.

I feel that my body is like the World War  battlefields. Everytime I eat something good, I can see the enemy cancer cells being chased away by my strengthened immune-system army at it's best, but every time I pop a chocolate or a biscuit into my mouth, I can see the swaggering, smug cancer cell army taking more than a pop at my precious immune system. It's a constant fight between good and bad, and this is the fight of my life and I really want to win it. So why do I seem to have a natural affinity with the enemy? When I eat a biscuit or a salami and salad-cream sandwich, I'm being a traitor to the cause, and I might as well just open the borders and let the enemy sail right on up triumphantly through my whole bloodstream.  This whole constant battle plays out in my head nearly all the time, and it's not just about the food I'm eating. It's the thoughts I'm thinking, the exercise I'm not doing,  and the rest and relaxation I'm not taking.So give it a week or so, and I'll have to write a battle strategy and this time, I'll have to stick to it. This cancer needs all the big-guns from all directions - both what the Generals from the medical profession can throw at it and what this little Home Guard can do on my own. "Who do you think you are kidding, Mr Cancer?" - that's my theme tune now. 

 Patient Power comes in all sorts of guises, both in taking ownership and doing whatever you can to augment the best in modern medicine in terms of lifestyle an diet, and also in finding a way to have a meaningful dialogue with your medical team about aspects of your care that you are not comfortable about.

 If you've been reading my writings for a while, you'll know that one of my biggest challenges with Cancer has been finding a way to cope with my extreme needle-phobia. I've decided early on to come out of the closet and admit this shameful secret to my Oncology Team. Almost without exception, they have been so supportive about it, but it was clear that, whilst being very kind and sympathetic, they were puzzled by it and its causes. I researched into the topic a bit, and although the Internet has a fair amount of material written about needle-phobia, I couldn't find a single word written by a needle-phobic patient, all the articles appear to be written by health professionals. So I wrote a blog-post about it, probably the hardest and most personal piece of writing I've ever done, and probably the first piece of writing on the subject from a patient perspective. It's been warmly received by many of the medical profession, and now I've been invited to speak at a very prestigious conference about it in London next June. I'm thrilled about this on a lot of different levels, not least because I'll get a nice posh day out in a top London Hotel,  but also because it looks like needle-phobia is being taken seriously, and I'm being given an opportunity to raise awareness and maybe even begin to influence medical culture and practice in some small way.   I feel very honoured, but also aware that I have a responsibility to do the best possible job in explaining and advocating  on behalf of the many thousands of fellow-sufferers, many of whom are probably too ashamed to own up to it.

If you know any health professionals who might want to read it what I wrote about this subject, it's in the list on the side with "needle-phobia" as part of the title. Please feel free to pass it on. 

So a very busy year ahead already. The play of this blog, "Coke Floats and Chemo". still needs to be written in time to rehearse it for it's debut at the Brighton Fringe in May. Then speaking at the conference in June. In between times, I'll be fighting my cancer on the beaches, getting very better, and planning a bucket list for my next 30 years. It will be a very good year - the writing's on the wall already. If I don't write again this year, all the very best for a lovely start to 2013.  My heart wants a party on New Year's Eve. My head says "Don't be ridiculous, you're exhausted!". I'll let you know what I actually decide, and my good friends may yet get a last minute party phone-call ....... !